Scottish Partnership for Palliative Care: Update

Welcome to Update, a monthly round-up of news relevant to palliative care in Scotland, brought to you by the Scottish Partnership for Palliative Care.

Policy

COVID-19 Public Enquiry

Information and updates relating to the Scottish Covid-19 Inquiry are available on their website. Recent updates include additions to the terms of reference, and the publication of academic scoping research.

National Care Service Bill published

The Scottish Government has published legislation to establish a National Care Service for Scotland. The National Care Service Bill will make Scottish Ministers accountable for adult social care in Scotland.

 

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Practice

My Health - My Care My - Home - a healthcare framework for adults living in care homes

The Scottish Government has published My Health - My Care - My Home, a healthcare framework for adults living in care homes. The framework examines how the health and healthcare of people living in care homes should be optimised, supported, and delivered.

Adult Disability Payment - National Stakeholder Events

Social Security Scotland will begin accepting new applications for Adult Disability Payment from clients living in all local authorities in Scotland as part of the national roll out of this form of assistance on 29 August 2022.

Adult Disability Payment has been designed to provide extra money to help with the costs of living with a disability and/or long-term health condition and will replace Personal Independence Payment in Scotland, which is currently delivered by the Department for Work and Pensions.

To ensure stakeholders have the relevant information they need to support clients and prepare their own services, Social Security Scotland will be hosting a series of free online stakeholder events to provide information on the key Adult Disability Payment topics, as well as answer any queries. Any questions about these events can be directed to the National Engagement and Partnership Team at: nationalengagementandpartnershipteam@socialsecurity.gov.scot

Homelessness and end of life

Marie Curie have established a national palliative care and homelessness ECHO network, which attracted 82 attendees from a wide variety of backgrounds at its first session in June. The next session is 12 July 2022. For more information or to register please complete this short form or email homelesspalliativecare@mariecurie.org.uk

Marie Curie has developed a new free-to-access set of resources in partnership with Pathway and UCL, with support from NHS England and the Oak Foundation, to help you to set up and lead regular meetings for anyone in your area that is supporting people experiencing homelessness with advanced ill health. They are looking for volunteers to help facilitate these local communities of practice - you can be from any professional background and full training will be given. Join their virtual information session on Thursday 7th July at 2-3pm or Tuesday 19th July at 2-3pm to learn more. Sign up here.

Sharing current Scottish Practice

The SPPC Autumn Season 2021 featured an online poster exhibition of 36 posters, sharing work and research underway across Scotland. Each month, our blog focuses on the content of a few of these posters. This month, we focus on:

The SPPC blog is a space to share practice currently underway in Scotland. If you have practice you'd like to share, please get in touch.


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Academic and Research

A better route through grief

Sue Ryder has published A better route through grief, a report looking at people’s access to bereavement support and their assessment of the support they received.

When a child dies: Learning from the experiences of bereaved families and carers

Healthcare Improvement Scotland and the Care Inspectorate have published When a child dies: Learning from the experiences of bereaved families and carers. The report makes eight recommendations to NHS boards, local authorities, public protection committees, third sector organisations and the National Hub to help improve the review process for families and carers.

Advance care planning in primary care for patients with gastrointestinal cancer: feasibility randomised trial

By Anne Canny, Bruce Mason, Jacqueline Stephen, Samantha Hopkins, Lucy Wall, Alan Christie, Richard JE Skipworth, Joanna Bowden, Louise Graham, Marilyn Kendall, Christopher J Weir and Kirsty Boyd. British Journal of General Practice 27 June 2022; BJGP.2021.0700. DOI: https://doi.org/10.3399/BJGP.2021.0700

The aim of this study was to assess the feasibility and acceptability to patients, carers, and GPs of a primary care ACP intervention for people with incurable oesophageal, gastric, or pancreatic cancer.

Last Aid Training Online: Participants’ and Facilitators’ Perceptions from a Mixed-Methods Study in Rural Scotland

by Leah Macaden, Kirsten Broadfoot, Clare Carolan, Kevin Muirhead, Siobhan Neylon and Jeremy Keen.

The primary aim of this study was to investigate the impacts of Last Aid Training for participants at the individual, family, and community levels, as well as explore participant and facilitator experiences and perspectives of Last Aid Training in an online environment. (Healthcare 2022, 10(5), 918; https://doi.org/10.3390/healthcare10050918)

An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care: GP Think Aloud and Patient and Carer Interviews

by Gill Hubbard, Kirsten Broadfoot, Clare Carolan, Hugo C van Woerden.

This study aimed to understand factors that influence GP use of automated computer screening to identify patients for the palliative care register and the experiences of palliative care and this emerging technology from patients' and carers' perspectives. (https://doi.org/10.1177/23743735221103029)

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Public and patient experience

Dying is never beautiful, but there are beautiful moments: qualitative interviews with those affected on the subject of ‘good dying’

Katharina Heimerl, Patrick Schuchter, Barbara Egger, Alexander Lang, Elisabeth Frankus, Sonja Prieth, Lukas Kaelin, Stefan Dinges, Klaus Wegleitner & Elisabeth Reitinger.

In this empirical study interviews were conducted with 32 people who were confronted with dying; these people were either terminally ill, elderly or else were bereaved carers. The findings show that for this group of people, dying is not just a physical process, but also a psychological, social and spiritual one. https://doi.org/10.1080/13576275.2022.2034773

Views of Care at End of Life: A Secondary Analysis of Online Feedback Using Care Opinion

Sahar Khonsari, Claire O Neill, Catriona R Mayland, MD, Fraser Gilmour, Marc Aitken, Alistair Mckeown, Sian Russell, Angela Mcalees, Morag Gardner, Bridget Johnston.

This study sought to understand experiences of end-of-life care provided in hospitals in the West of Scotland by exploring the main themes within the content of stories posted on a nationally endorsed nonprofit feedback online platform. https://doi.org/10.1177/23743735221103029

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SPPC News

Poster Parade 2022: Call for abstracts

Following on from the success of last year's virtual Poster Parade, this year we are once again running a virtual poster display and competition this autumn.

Are you involved in an interesting project or in an area of work that you would like to promote and showcase? If so, why not present your work at our virtual poster exhibition? This is a great opportunity to share your learning and tell others about your work.

More information about how to take part in the Poster Parade and submit an abstract is available here: Poster Parade 2022: Call for Abstracts

Bereavement-friendly workplaces resources

The SPPC and Good Life, Good Death, Good Grief have launched new resources for people who want to make their workplace a supportive place for people who have been bereaved. This includes information for colleagues, managers and employers, as well as for people returning to work after a bereavement themselves. There are links to training, resources, films, good practice guidance and bereavement support organisations. The resources can be viewed below:

Demystifying Death Week

Good Life, Good Death, Good Grief has published a brief report reflecting on Demystifying Death Week, which took place across Scotland from 2-6 May.

Response to Cancer Services Consultation

The SPPC has responded to a Scottish Government consultation on a new strategy for cancer services. The SPPC's response can be viewed here: SPPC Response to SG Consultation on a New Strategy for Cancer Services

Response to Health and Social Care Strategy for Older People Consultation

The SPPC has submitted a response to the recent Scottish Government consultation on a Health and Social Care Strategy for Older People. The SPPC's response can be viewed here: SPPC Response to Health and Social Care Strategy for Older People consultation.

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Other News

Survey - EU4CHILD

EU4CHILD is a project which aims to provide top-quality, evidence-based AI services to accelerate an early diagnosis, prognosis, treatment and care of children with cancer. To support the success of the project and undersand the needs of stakeholders,the project would like to hear from healthcare professionals working in the field of paediatric cancers, policy and decision-makers, young people, their families and carers, survivors of paediatric cancers, AI and digital technology developers and experts, and all associations and other bodies representing these cohorts. You can access their survey here: EU4CHILD survey.

Being Ready: trans, intersex and gender diverse experiences of dying, death and bereavement

The ‘Being Ready’ project was set up to address the needs of trans, intersex and gender diverse people during all stages of dying, death and bereavement. This project is being led by the Gender Identity Research and Education Society (GIRES), in collaboration with Hospice UK and Stonewall. They are creating evidence-based training for professionals who work with the dead, dying or bereaved so they are ready to meet everyone’s needs, and be more trans and intersex inclusive. They are currently seeking views via two surveys:

Bereavement Charter Mark for Employers

The Scottish Bereavement Charter Group has launched a new Bereavement Charter Mark to recognise employers who support bereaved staff. Having the charter mark on your website demonstrates that you are working to make your community a place where people who are bereaved feel supported by the people around them. To display the mark, an organisation must first agree to meet certain criteria. More information about how to apply for the Bereavement Charter Mark is available here: weblink

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Events

7th Public Health Palliative Care International Conference

Organised by PHPCI. 20-22 September 2022, Bruge, Belgium. More information is available here: weblink.

European Grief Conference: Bereavement and Grief in Europe – Emerging Perspectives & Collaborations

Organised by the Danish National Center for Grief in partnership with the Bereavement Network Europe (BNE), Aarhus University, and the Irish Hospice Foundation. 21-23 September 2023, Copenhagen, Denmark. More information is available here: weblink.

2nd Annual Scottish Bereavement Network: Recovery, Remembering and Moving Forward Together

Organised by the Scottish Bereavement Network. 4 October, Falkirk. For more information or to book a place contact Eileen on: eileen.moulton@childbereavementuk.org

After the last breath

Organised by Pushing up the Daisies. 01/10, 22/10, 12/11, 03/12 – all at 11am. More information is available here: weblink.

Moving forward in palliative medicine

Organised by Strathcarron Hospice. 20-21 October, Edinburgh. More information is available here: weblink.

To Absent Friends, A People's Festival of Storytelling and Remembrance

Participative event initiated by Good LIfe, Good Death, Good Grief. 1-7 November. More information is available here: weblink.

5th All Island Children's Palliative Care Conference: Communication: compassion and common ground

17 & 18 November 2022, Belfast. More information is available here: weblink.

Hospice UK National Conference

22-24 November, Glasgow. More information is available here: weblink

2022 NES Bereavement Education Conference

Organised by NHS Education Scotland. Online. Thursday 24th November 2022. More information will be available in due course.

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